Update to all you lovely ladies xx

Saw gynae onc, yesterday he too is slightly bemused as to why stomach bloating and pain had a feel around and could not find anything obvious but has sent me for a whole series of blood tests including 3 sets of different tumour markers. He has said that depending on results he feels that a CT scan is in order, more waiting, bearing in mind i had planned on returning to work on 17th on a phased return, so am now undecided about the work thing. Also have finally received my urgent colorectal consultation ... 27th June!!! and have urology next week, so i hope to have all my answers by July, fingers crossed xx thanks for listening xx Nessie xx

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  • Hope you get some answers soon, it's all the waiting for tests and scans that is the worst bit for me. Going back to work is daunting but I am now back full time and enjoying it more than I did before - but you need to do what your body tells you and if it doesn't feel right and you can stay off a bit longer then don't rush back, work will wait I'm sure.

    Look after you lots of love Amanda x

  • thanks Amanda, considering my options at the moment, now thinking i might wait till after the last investigation , love nessie xx

  • Dear Nessie, you have quite a few things to sort out. Do think carefully about returning to work. It can be a distraction for some. For others the hope of some lovely summer weather is a great comfort to the soul.

    I wish you love and luck with all these investigations. It's horrible waiting but at

    least you do seem to be in very good hands. Xxx love Annie

  • thanks Annie, the waiting is the worst part but as always we must stay positive, love nessie xx

  • Dear Nessie

    I hope you can keep cheerful. I've just had a look at your profile and would just like to comment that having an aggressive fast-growing type of cancer doesn't necessarily mean it will be fast-growing in you. Hopefully that's a bit of good news for you.

    I only found this out 2 years after diagnosis. I have undifferentiated cells so they're the fastest growing and they'd spread themselves liberally around my lymph and too deep in the abdomen for the surgeon in Cardiff to get rid of the blighters. I thought this must be a death sentence but 2 years on my GP's just explained to me that I have fast-growing tumours but they're slow-growing in me. A paradox but one that has given me much hope.

    Hope it does for you too.

    Love Annie xxx

  • Thats good to know thanks Annie. I hope that is the case for me but i just think back to my original scan and the mass was 15cm and 3 weeks later was 26!! I will speak to the consultant about it next time.

    Annie, hope you dont mind me asking but do you know if there is any genetic testing for OC. I will explain, my 19 year old daughter had an abdominal terratoma diagnosed when she was 13, which stemmed from the ovary for which she had chemo that had no affect and subsequent surgery whereby the tumour weighed in at 2 stone!! at the time we were told it was due to puberty, just wondering whether there is a link as i have another daughter who is 13 at the moment, any advice would be appreciated, thanks nessie xx

  • Dear Nessie

    As you know I'm not a professional in health care by any means but can share my own experience of genetic testing for the BRAC gene. They generally ask you if you have 2 near relatives who've had breast, ovarian or prostrate cancer. My sister and dad had these and they agreed to test me. I was negative.

    I had to google teratoma. It's a tumour so it's a cancer but thank goodness your daughter's was non-malignant. I think what with you and your daughter's brush with this disease you should be able to go to your GP and argue that you would like to be tested and it would also help your fight against cancer to have this worry eliminated from the other things that are concerning you.

    My daughters came along with me and we had some brief counselling beforehand. I'm not sure what happens with a minor. I would imagine it would be better not to involve her unless you were given reason to think there is a genetic tendency in your family towards breast/ovarian/prostrate cancer.

    I hope this is helpful and gives you some fodder to tempt your GP to refer you for genetic testing.

    Loads of love xxx Annie

  • There seems to be a whole lot going on the moment. I had the test for BRCA1/2 gene. They take a blood sample, send you for genetic counselling and then it takes p to 6 months to get the result. May have changed in procedure.lately .. I'm not sure. Can I ask what you do for a living? X

  • Hi Tina, thanks for the response and im a health care assistant in the hospital that im being treated at, ironic i would say xx

  • Dear Nessie,

    I have read your profile and you have been on quite a journey.

    I hope the blood tests shine some light on how you are feeling and the addition of a CT scan probably would clarify the position.

    I can only imagine that the most frightening thing for you has been the growth pattern, and probably found this alarming as much as the diagnosis. If we can see something growing on the outside, in some way, we accept it a bit more because we can see it, but when something is inside, it is easier to explain to someone and for us to understand. This has all happened very quickly for you, and it is like being 'hit by a bus', and you have hardly any time to absorb everything that has happened to you. I too was diagnosed with fast growing cells, namely clear cell, serous, and poorly differentiated, and have been conscious of the fact that I was told that they are unpredictable cells which grow rapidly. I have found out recently that although they are fast growing cells, that they do not come back as aggressive, but as slow growing, so that is a plus.

    The best bit of advice I have been given is to breath......slowly....and take one day at a time!

    Anxiety plays a big role with all of us, and can affect our every day life, so therefore dampen and happiness that we have. We will beat this awful disease ......

    Sending hugs

    Janette xxx

  • Dear Nessie, just wanted to say hang on in there. I would definitely ask for genetic testing. Even though she hasn't had genetic tests, my sister is given a CA125 test yearly and an external examination. We had a grandmother who we think, had OC, but in those days they didn't really talk about it. It was cancer but my Dad was only told it was in her tummy. He was only 21 at the time. As others have said, waiting is the hardest part. Try to plan a few distractions each day, consider if you feel work would make the time pass more quickly. It may, if you feel up to it.

    All the best. Sending you hugs (((xxx)))

    Love Wendy xx

  • Dear Nessie

    I know how hard it can be waiting for test results. My friend had oc and had the generic testing which was positive so her adult daughter had the test too and it was only a few Weeks before she got the result which was negative luckily. I would recommend reading books that can be uplifting if you haven't already like everything you need to know to help beat cancer by Chris woolhams. See cancer active website. I hope you can still enjoy some of this lovely weather

    All the best

    Francesca x

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